The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.

Saturday, June 20, 2009

And she's back

It's been a lovely Saturday here complete with sweet family time on a blanket at the farmers market and Simon has just gone down for his afternoon nap.

Jaime was shopping at Trader Joe's and Simon was just at the beginning of his feed. He and I were nestled comfortably in the rocker and it seemed like he was just about to close his eyes. He was playing with my fingers, touching the pads of his to the pads of mine. Playing gently with the pressure of digging a nail in versus just finger pad to finger pad. So frikkin' sweet.

I leaned over to smell his head, which I often do, appreciating that smell, and there it was.A visceral memory of another time. Another time when I was smelling Simon's head where I remember thinking this might be the last time that I get to do that.

That first night in the hospital when Jaime and I would take turns holding him as we waited to see/understand what was going on. Holding him in our arms while hour after hour, his little heart and body became more and more exhausted. Holding him in my arms smelling his head while they wheeled us from admitting to the ICU. Breathing him in.

There I was in our bedroom with him after a lovely happy morning, nothing that different, smelling that same sweet Simon head smell.

And there she was. She was back. Standing right across the room from me. Death was back.

Not in a scary way. She was just there. Of course she'd been around all morning...I remembered that I had woken up from dreams that were all about death. Not scary ones but just crazy dreams that included Jack Black and a friend from the not so long ago but distant past that had died, showing up and dying again but in this very matter of fact- you just gotta be with me while it happens- kind of way.

So there she was. Looking a lot like Georgia O'Keefe but with long flowing grey hair and a kind of dusty rose summer dress on. She was barefoot and looking so sweetly at us that I couldn't help but feel kind of comforted.I know it's weird but Jaime, Simon and I have a very special relationship with her and I think it's fitting that she come around every once in a while.

I am so aware of being in that cycle with Simon. And I believe it is a cycle. From just before that moment that you come into being (and you sweet reader, you get to decide when that moment is) until just after that moment of your last breath. I don't know really if you go back to that same place but it feels like a cycle to me. From before you were 'being' to after you're done 'being', at least this being that you are right now.

None of us know where we are on the ride, only that at some point it's going to come to an end. With cardiomyopathy and with Simon it just feels like we are called to think about it a little more than I normally would.

Sure, it's fun to pontificate on death occasionally. Over a dinner with close friends on a random night when the conversation runs it's crazy course. We've all had too much of some inebriating substance and gone down those crazy conversation roads right?

Being Simon's Mommy, travelling his road with him, having a close and regular relationship with death, it's just different.

So, she's back.Well, actually she's gone right now. Just a short visit today. Fine by me.

Jaime's making strawberry ice cream. Had she stayed we might have offered her some... but in a to-go cup if you know what I mean.

1 comment:

I agree with you about the cycle. I like to think we go back to where we came from, at least for a little while, and if that's true my kids got to be with my parents for a while before they came to me.

You two are so... strong is the word that first comes to mind, but it's not enough for you.

I keep meaning to tell you, after we saw you (L&S) at Skyline Trevor kept telling me how much he wanted to hug and kiss Simon. I told him he couldn't and he said "just a little kiss..." I'm sure lots of toddlers feel that way about him. Hopefully one day he will get all those kisses coming to him.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com